Today I am collecting what I'm pretty sure is my 15th ever UFC. The non-cushies among you probably have no idea what I'm talking about. To those who do: wink wink giggle giggle high five!
Health update coming soon...
Sunday, January 31, 2010
Friday, January 22, 2010
Misdiagnoses! My Seven Best
It's some sort of crazy cushie rite of passage: over the years, as we bounce from doctor to doctor, most every Cushing's patient accrues more than his or her fair share of misdiagnoses. Makes sense, really. Cushing's is rare (though, arguably, not as rare as most doctors claim) and because it presents with such a dazzling array of seemingly unrelated symptoms, doctors account for them by slapping us with relatively common ailments. It must be PCOS. No, fibromyalgia... that's gotta be it! Diabetes! Chronic fatigue syndrome! Migraines! Hypertension! Thyroid!
I don't mean to insinuate that these diseases aren't perfectly real (they are!) and/or that they can't occur in conjunction with Cushings (they can and do!). But, for those of us who are eventually diagnosed with Cushing's, these earlier diagnoses often turn out to be symptoms as opposed to stand alone diseases, and nearly as often turn out to be... well... just plain wrong. In my search for answers, I got all kinds of kooky suggestions, ideas, suspicions and other misguided attempts to explain my symptoms from doctors and other health professionals. Here are seven of the most memorable:
1. "You exercise too much!" Yup, I actually had one doctor chalk my symptoms up to overexercising. He noticed I was carrying my bicycle helmet and said something like "You like to ride your bike, eh? Do you exercise much otherwise?" When he learned that I exercised 2 - 6+ hours every day (jogging daily, biking everywhere, dancing from midnight to six am... that sort of thing), he explained that vigorous exercise actually causes people to gain weight. I kid you not. A real live doctor said this! He also alleged that it accounted for my many other symptoms, but when asked to explain, he changed the subject and advised me to stop biking altogether, because, he claimed, in addition to the whole making you sick and gain weight thing, bicycling in the big city was terribly dangerous. I left his office, got on my bike, rode home, and found a new doctor.
2. "Your Chi is allllll fucked up!" My acupuncturist in SF, who was fabulous and funny, talked a whole lot about Chi and how incredibly out of whack mine was. Though she never actually used the words "allllll fucked up," this is David's interpretation of her diagnosis :) And frankly, it probably wasn't a misdiagnosis at all. Thanks to a certain hormone secreting tumor that disrupts every body system, I'm sure my Chi was alllllllll fucked up.
3. "Tell me more about your mother..." This, unfortunately, is a common occurrence for not-yet-diagnosed Cushing's patients: poo-head doctors claim that it's all in our heads. Because western medicine up to that point can't explain our symptoms, they assume that we must have some deep-seated psychological problem that's making us "sick." This only happened to me once, thank goodness... it was more than enough. It's incredibly unsettling to have a doctor tell you that you're not really sick, when you know, without a doubt, that there's something terribly wrong. Anyhoo, when this dude found out that I had what he called "a notable psychological history" (my mom was mentally ill most of her adult life), he decided that it had to be the root of my problems. He spent about an hour asking about my childhood and my mother's illness while completely ignoring my illness. He asked me all kinds of leading questions, like "do you sometimes feel so frustrated that you feel like you want to hurt yourself?" (ummm... NO!) and "Well, surely, after such a traumatic childhood, you must feel extremely angry to have all those years stolen from you." (Again: umm, no. Not really at all, actually). I, BTW, didn't tell him that my childhood was traumatic (it wasn't), instead, that was his interpretation based on knowing that I grew up with a mother who was mentally ill and that I was now inexplicably ill. The dude was a pompous jerk. Unfortunately, I can't say his name or even the clinic he's from (he's from a very well know clinic and this could be construed as slander or some shit, right?). But I can say this: he was right about one thing, it was all in my head -- in my freakin' pituitary gland, you freakin' ASSHOLE.
4. "Have you had your thyroid checked?" Dear lord, yes. Yes yes yessssssss. So. Many. Times. Some Cushing's patients have thyroid problems in addition to... well... Cushing's. Not me. My thyroid is fine. Downright spectacular even. But because thyroid problems are far more common than Cushing's and many of the symptoms overlap, doctors are much quicker to think thyroid! than they are pituitary tumor! Just for shits and giggles, I went through records to see how many times I've had my thyroid levels checked over the years. 13. Yup, 13 separate times over the course of 9 years. If only those tests had been aimed at checking my cortisol levels... sigh.
5. "You have chronic diarrhea because you're vegetarian. It's actually a good sign that you eat plenty of fiber!" Nuff said.
6. "I don't think it's fibromyalgia, but why not try these pills and see if they help!" This doctor ruled out fibromyalgia, but wanted to treat me for it anyways... ?!? He preformed some weird test, which basically involved pressing on me a whole lot...
Doc: Does this hurt? Me: No.
Doc: Does this? Me: No
Doc: How 'bout this? Me: Umm... no?
Doc: This? Me: No
This went on for quite some time and then he said something like: "We'll, it's definitely not fibromyalgia! Haha." But then a few minutes later: "Why not try this medication for it anyways and see if it helps? It's also an antidepressant, so it'll make you feel real good!" Nice.
7. "Super DJ Acid Fingers!" Okay, so this one doesn't qualify as having come from a medical professional on account of it being a self-diagnosis, but still... it's awesome. In my early years of Cushing's, I experienced all kinds of whacked out skin changes, one of which being that the tips of my fingers became extremely dry and cracked and painful and nasty. My old friends, I'm sure, remember the stunning rainbow of bandaids on my finger tips. I was taking several chemistry lab classes at the time, which involved experimentation with acids and because I wasn't much of a glove wearer (you know: young and invincible), I often spilled little bits of it on my fingers. I assumed that the fucked up fingertips were a result of the acid, which earned me the nickname "acid fingers." I couldn't figure out why my fingers never healed after I started wearing gloves and then even when I refused to work with acid altogether. My doctor said there was no way that the acid was causing my skin problems. I didn't believe him at the time, but hey, turns out one of my doctors was right about something! Yay!
We'll, that's all I've got for now. I'd love to hear from other cushies... what were your best misdiagnoses over the years?
I don't mean to insinuate that these diseases aren't perfectly real (they are!) and/or that they can't occur in conjunction with Cushings (they can and do!). But, for those of us who are eventually diagnosed with Cushing's, these earlier diagnoses often turn out to be symptoms as opposed to stand alone diseases, and nearly as often turn out to be... well... just plain wrong. In my search for answers, I got all kinds of kooky suggestions, ideas, suspicions and other misguided attempts to explain my symptoms from doctors and other health professionals. Here are seven of the most memorable:
1. "You exercise too much!" Yup, I actually had one doctor chalk my symptoms up to overexercising. He noticed I was carrying my bicycle helmet and said something like "You like to ride your bike, eh? Do you exercise much otherwise?" When he learned that I exercised 2 - 6+ hours every day (jogging daily, biking everywhere, dancing from midnight to six am... that sort of thing), he explained that vigorous exercise actually causes people to gain weight. I kid you not. A real live doctor said this! He also alleged that it accounted for my many other symptoms, but when asked to explain, he changed the subject and advised me to stop biking altogether, because, he claimed, in addition to the whole making you sick and gain weight thing, bicycling in the big city was terribly dangerous. I left his office, got on my bike, rode home, and found a new doctor.
2. "Your Chi is allllll fucked up!" My acupuncturist in SF, who was fabulous and funny, talked a whole lot about Chi and how incredibly out of whack mine was. Though she never actually used the words "allllll fucked up," this is David's interpretation of her diagnosis :) And frankly, it probably wasn't a misdiagnosis at all. Thanks to a certain hormone secreting tumor that disrupts every body system, I'm sure my Chi was alllllllll fucked up.
3. "Tell me more about your mother..." This, unfortunately, is a common occurrence for not-yet-diagnosed Cushing's patients: poo-head doctors claim that it's all in our heads. Because western medicine up to that point can't explain our symptoms, they assume that we must have some deep-seated psychological problem that's making us "sick." This only happened to me once, thank goodness... it was more than enough. It's incredibly unsettling to have a doctor tell you that you're not really sick, when you know, without a doubt, that there's something terribly wrong. Anyhoo, when this dude found out that I had what he called "a notable psychological history" (my mom was mentally ill most of her adult life), he decided that it had to be the root of my problems. He spent about an hour asking about my childhood and my mother's illness while completely ignoring my illness. He asked me all kinds of leading questions, like "do you sometimes feel so frustrated that you feel like you want to hurt yourself?" (ummm... NO!) and "Well, surely, after such a traumatic childhood, you must feel extremely angry to have all those years stolen from you." (Again: umm, no. Not really at all, actually). I, BTW, didn't tell him that my childhood was traumatic (it wasn't), instead, that was his interpretation based on knowing that I grew up with a mother who was mentally ill and that I was now inexplicably ill. The dude was a pompous jerk. Unfortunately, I can't say his name or even the clinic he's from (he's from a very well know clinic and this could be construed as slander or some shit, right?). But I can say this: he was right about one thing, it was all in my head -- in my freakin' pituitary gland, you freakin' ASSHOLE.
4. "Have you had your thyroid checked?" Dear lord, yes. Yes yes yessssssss. So. Many. Times. Some Cushing's patients have thyroid problems in addition to... well... Cushing's. Not me. My thyroid is fine. Downright spectacular even. But because thyroid problems are far more common than Cushing's and many of the symptoms overlap, doctors are much quicker to think thyroid! than they are pituitary tumor! Just for shits and giggles, I went through records to see how many times I've had my thyroid levels checked over the years. 13. Yup, 13 separate times over the course of 9 years. If only those tests had been aimed at checking my cortisol levels... sigh.
5. "You have chronic diarrhea because you're vegetarian. It's actually a good sign that you eat plenty of fiber!" Nuff said.
6. "I don't think it's fibromyalgia, but why not try these pills and see if they help!" This doctor ruled out fibromyalgia, but wanted to treat me for it anyways... ?!? He preformed some weird test, which basically involved pressing on me a whole lot...
Doc: Does this hurt? Me: No.
Doc: Does this? Me: No
Doc: How 'bout this? Me: Umm... no?
Doc: This? Me: No
This went on for quite some time and then he said something like: "We'll, it's definitely not fibromyalgia! Haha." But then a few minutes later: "Why not try this medication for it anyways and see if it helps? It's also an antidepressant, so it'll make you feel real good!" Nice.
7. "Super DJ Acid Fingers!" Okay, so this one doesn't qualify as having come from a medical professional on account of it being a self-diagnosis, but still... it's awesome. In my early years of Cushing's, I experienced all kinds of whacked out skin changes, one of which being that the tips of my fingers became extremely dry and cracked and painful and nasty. My old friends, I'm sure, remember the stunning rainbow of bandaids on my finger tips. I was taking several chemistry lab classes at the time, which involved experimentation with acids and because I wasn't much of a glove wearer (you know: young and invincible), I often spilled little bits of it on my fingers. I assumed that the fucked up fingertips were a result of the acid, which earned me the nickname "acid fingers." I couldn't figure out why my fingers never healed after I started wearing gloves and then even when I refused to work with acid altogether. My doctor said there was no way that the acid was causing my skin problems. I didn't believe him at the time, but hey, turns out one of my doctors was right about something! Yay!
We'll, that's all I've got for now. I'd love to hear from other cushies... what were your best misdiagnoses over the years?
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